Improving the lives of stroke survivors with data

Effective hospital care today means that more people with stroke are surviving than in the past. However, these survivors of stroke are often living with a range of complex needs, including severe disability and other long-term health conditions.

Another feature of modern medicine is highly advanced brain scans, meaning that health professionals can now detect more stroke than ever before. This has led to new classifications of stroke, including asymptomatic and mildly symptomatic patients.

A team of vascular researchers at ARC South London, led by Professor Charles Wolfe, have secured £2.2m funding from the NIHR, to initiate a new research programme designed to understand the impact of these developments in healthcare. Their aim is to improve the lives of stroke survivors by developing new ways of collecting, analysing, and modelling data.

What is the aim of the project?

This programme aims to produce the tools, data, and analytics needed to improve the lives of stroke survivors. The researchers, who are based at Guy's and St Thomas' NHS Foundation Trust, King's College London, and the University of Oxford, are working closely with stroke survivors, clinicians, and local and national policymakers to help translate their research findings into improved care.

As well as research publications, the team will produce policy briefings, reports, open-source software and data, and platforms for patients and policymakers to access data and models.

The specific objectives of the researchers are to:

• Maximise the potential for stroke data to improve patient care
• Estimate the risk and longer-term impact (including economic) of stroke on survivors and society
• Produce clinical, epidemiological and economic models, which will provide the information needed for all stakeholders to make informed decisions
• Investigate how patient portals can improve stroke survivors’ decision making and outcomes. 

Benefits to stroke survivors and the NHS

The researchers envisage the following benefits to stroke survivors and the NHS, achievable by the planned end of the project in October 2026:

• Healthcare improvements driven by stroke survivors, their families, and stakeholders
• Changes to local and national health policy, to better meet the needs of stroke survivors in the 2020s
• Ability of policymakers, commissioners, and clinicians to base decisions on up-to-the-minute and accurate data on stroke risk and outcomes
• Improved access for patients to their own health data, aiming to ensure that they are involved in their decision making.

How the research will be carried out

The research programme will organised across the following three work packages:

• Work package 1: Maximise the potential for stroke data to improve care, through research with stroke survivors, health professionals, and policymakers
• Work package 2: Investigate the impact of stroke on survivors in the 2020s. The researchers will use local and national data to estimate the health, social, and economic effects of stroke, on both individuals (through predictive models) and at a population level for the next 30 years
• Work package 3: Investigate how patient portals improve the care of stroke survivors, who may be older, with multiple morbidities, and communication and cognitive impairments.

In addition, the team will develop a ‘Stroke Analytics Dashboard’ to make detailed, accurate, up-to-date information available to the public and policymakers for decision making.

Involving survivors, carers and other stakeholders

At the heart of this research programme is the effective involvement of a diverse group of stroke survivors, their families and stakeholders involved in stroke care. The researchers are setting up two groups:

• A patient and public involvement group (PPI), recruiting a diverse group of 20 stroke survivors and carers from across England and Wales
• A senior executive group (SEG) with 20 members, including stroke survivors and carers, GPs, managers and commissioners, allied health professionals, researchers, and charity members.  

The researchers aim to work with the same individuals for the whole programme to nurture a collaborative relationship between stakeholders and programme team, share technical and experiential knowledge, and develop a detailed understanding of each other's priorities. They will also work with local and national PPI groups and stakeholders for specific workshops.

The principles of coproduction - power-sharing, reciprocity, respect and inclusion of different groups and different perspectives - are central to both the PPI and SEG groups.

The project started in October 2021 and is expected to finish in October 2026.